The Worldwide Bone Marrow Registry

Have you heard of the bone marrow registry? Well neither had I, not until my cousin was diagnosed with leukaemia. Bear in mind that I was at this time a final year medical student immersed in a hospital environment, yet still this aspect of medical care was new to me.

There are a few severe forms of cancers and blood disorders that can cause so much disruption to your bone marrow – the blood factory inside your bones – that a complete bone marrow transplant is the only effective treatment. This process essentially involves an entire depopulation of the diseased bone marrow and then repopulating that vacant space with newly donated, healthy bone marrow. It is an extreme form of treatment, but one that has saved countless lives.

In order for this treatment to be available there needs to be a bone marrow donor. This cannot be just anyone, for the bone marrow that is donated must perfectly resemble that of the recipient – this is called a matched donation. The genetics dictate the specific type of bone marrow a patient might have and logically doctors will first check close family members for a match. Surprisingly as little as 30% of patients are able to find a match within their family and so the majority of patients have to search for non-related donations. In contrast to the relatively few blood types, there are many thousands of variances in tissue types and this makes it challenging to find that perfect match.

In 1974, an American family who was desperate to find a match for their son, with no match found in the family, went on to conduct an international search in hope. Remarkably a match was found, identified via a blood bank as far away as Denmark. This was the first unrelated bone marrow donation to have ever taken place. It also started what was soon to become the bone marrow registry.

There were many sceptics to the registry who asked: ‘who would donate to a stranger?’ Well, with over twenty-three million donors registered worldwide and over fifty-five thousand bone marrow donations to date (and counting) the sceptics have truly been answered.

What is the bone marrow?

The Bone marrow is a soft tissue found in the centre of certain bones in your body. It is this bone marrow that creates and protects your blood stem cells. Blood stem cells are general ‘precursor’ cells and with the right instruction they can grow into any of the cells found in your blood stream – oxygen carrying red blood cells, infection fighting white blood cells and platelets that help stop bleeding.

What is involved?

Advances in modern medicine have allowed doctors to collect the important stem cells directly from blood stream and not from your bones – thus removing the need for an anaesthetic. This is termed a Peripheral Blood Stem Cell donation (PBSC) and makes a donation significantly more appealing. Similar to a prolonged blood transfusion, you are connected to a machine that delicately harvests stem cells from your blood. These are then transfused to the patient in a similar way a blood donation would be made. (http://www.youtube.com/watch?v=lv2LSVgNWjg#t=117)

There are occasions when the doctor may still request actual bone marrow from the donor. This is however, a far less aggressive procedure than the perceived image of a surgeon drilling into your bones. It does still involve a general anaesthetic but the marrow itself is obtained by a needle and syringe from your hipbone.

When can you donate?

If you are aged 16-45 (depending on your country) and are otherwise healthy you can join the register today but you will only donate if the right match comes up. This is actually quite rare and it may even never happen. The probability is reported to be between 0.5-1% for a registered donor to actually donate.

How can you register?

Your tissue type needs to be identified. This can be achieved from a simple saliva sample, a cheek swab or sometimes a blood sample. You have to answer questions to indicate you are in suitable good health and provide up-to-date contact information, this is important – if you are the match, they need to be able to find you.

Why should you donate?

There are too many patients who are still unable to find a stem cell donor. If you are of Northern European descent you have a convincing 90% chance of finding a match, but if you descend from South Asia your chances plummet down to less than 1%.

Despite the huge number of international registrations, there is a shocking disparity of uptake between continents. Until 2011, India did not even have a bone marrow registry – let alone any registered donors. A perfect match is based on genetics and therefore easier to locate within similar ethnic groups. As a consequence, the disproportionately low number of registrations from Indian, Hispanic and African communities, mean that some patients will never find a donor.

At this point I would like to refer back to my first point –before my cousin contracted leukaemia, why was the bone marrow registry unknown to me? For fear of ignorance I consulted my friends and colleagues both at home and abroad and it seemed I was not alone. With nearly 23 million registered donors worldwide, why is there still so little awareness in the public eye?

So what can we do?

The only current institutional method to encourage recruitment is at the time of a regular blood donation. This usually involves leaflets and a display at the time of donation. But with relatively few people donating blood on a regular basis, this method is just not reaching the general public.

The more popular recruitment drives, usually stem from friends and family of current bone marrow recipients. For example, the catch phrase ‘Give a Spit’was initiated by friends of an Indian student who was struggling to find a match because of the complete lack of awareness in India.

It is the college and university campus that are the breeding ground for these ideas, pioneered by the students who are able to capitalize on their environment; some campuses are bigger than many small towns but populated with a similar demographic. With the right marketing, it can quickly become popular or even ‘cool’to register, particularly when the sports teams get involved. This ‘cool’factor was particularly played upon with a recent celebrity endorsed YouTube video promoting the bone marrow registry. Although these efforts are really making a difference, evidenced with the current campaign to swab 100K cheeks, why should we be relying on student entrepreneurism to keep the registrations coming?

With hesitant expectation, I look towards national education systems. Blood and organ donation are only commonplace topics in Western schools, and even there, they still do not feature on the national curriculum. The Anthony Nolan Trust gives presentations to students aged 17-19 in the UK to promote all aspects of blood, organ and bone marrow donation (http://www.anthonynolan.org/how-we-help/education-register-be-lifesaver) but the area they cover is limited and the team is small. The strong drive for blood and organ donation to be on the curriculum should be joined by the growing bone marrow campaign to ensure that they are all included. When this is achieved it might just provide the exposure required to reach people of all backgrounds, all ethnicities and allow this treatment to be available to all.

This is not an issue isolated to one country or one demographic; it is an international issue and has been so far managed with great effort by few. If we can just make small changes permanent, then the idea that someone has to go without a donor will be a thing of the past.

If you were given the chance to save a life, would you say no? Register today!

For more information regarding country specific details follow the link below:

7 persons shared their opinion! Join the discussion!

Excellent article Ema! I have a question: Why do you think people are so uninformed in Romania on this topic? And I am talking mostly about medical students. Who should be blaim for it? Please elaborate. Many thanks in advance.

Patricia, first of al I think it’s due to the lack of involvement of the media but also, as I stated above, due to the lack of formal teaching on the subject (e g blood donation, hematopoietic stem cells donation in the last year of high school or/ and at university).
The sad thing is though, that even after being informed, the number of young Romanians which actually go and register is low. Of course, we shouldn’t be too harsh on ourselves, considering in Romania you have to go to the local Donation center and give a 15 ml sample of blood, whereas in other parts of the world you receive the kit at home and you just have to send off a saliva sample or cheek swab.

Very interesting article! I will be honest and say that I did not know about this until I read what you wrote. But as you said yourself, people usually find out about such procedures only when a loved one or they themselves need it. About the lack of information on such topics (donations of organs, marrow or tissue), I believe it may have to do with the sensitivity of the topic. The way in which people relate to their bodies has to do with many cultural and religious convictions that play a key role in our understanding of such aspects. Therefore, if in some countries such procedures are better known by the larger public and they are performed on a regular basis, there may be many reasons behind this. Also, about organ donations in general, there are a lot of ethical issues to be considered and there is no consensus in the medical world about some aspects, such as “is it moral to perform surgery on a healthy body, to remove part of it for donation? What happens if the donor’s health deteriorates after the surgery?” or “what is brain death actually?” (not all cultures accept this notion). So the doctors have to analyze each case very carefully, run psychological and physical tests and take a very difficult decision. Patricia asked about who is to blame and I believe things are more complicated than this. The bone marrow donation seems like a very safe procedure from what you wrote, therefore I believe it would be relatively easy to promote it. But if we talk about organ donation, then it’s a completely different story and I’m not sure how to approach it. Perhaps in Romania, the first step would be to make it possible for people to agree that their organs could be harvested and used to save people’s lives. As far as I know, this doesn’t exist yet… What is your take on this?

I could not agree more re lack of promotion. I myself joined the registry after having it explained to me during a regular blood donation, but at that point had been a donor for 2 years without anyone having mentioned it. The reason this particular nurse told me about it was because her daughter had had a leukaemia scare. So even among the population who give blood, this is not being adequately promoted. I agree that, while blood/organ/bone marrow donation is a sensitive area for many people for a variety of ethical, cultural and religious reasons, this is at least an issue that should be more readily discussed in schools.

Very interesting, Ema! thank you for these informations which were unknown to me until now. It’ s amazing that we can do great thing with such a small “sacrifice”. Let’s hope that people will be willing to help others and that the rate of registers will increase! Good luck!

I think the big difference between donating other organs and donating hematopoietic stem cells best transpares from the Bone marrow transplant’s Institute advert, our bone marrow is not finite, it continuosly self-regenerates, that is the beauty of this Registry, it’s nice and easy !